With great pleasure we would like to share our second music video from our musical project Ondinata. Songs for Ondine. “Lullaby for Ondine” is a very special song, because the rhythm is played by the medical equipment of a CCHS patient (pulseoximeter, oxygen concentrator, ventilator, diaphragm pacers).
Imagine having to listen to the sound of your child breathing 24/7, because each and every moment it can stop.
Who are we?
We help people suffering from CCHS (Ondine’s Curse) and their families as well as supporting research on finding the cure.
We are happy to announce that the next 2 Avery Biomedical Devices diaphragm nerve stimulators were successfully implanted in two children suffering from CCHS, Dawid and Daniel. The operations were again performed by a wonderful and committed team of the Department of Neurosurgery at the Copernicus Hospital in Gdańsk. Congratulations and big thanks to the operator Dr. …
Польський фонд CCHS «Зніміть прокляття» шукає сім’ї з CCHS в Україні. Ми хочемо надати будь-яку допомогу у війні, що триває, особливо з безпечним переїздом до Польщі. Якщо ви є або знаєте когось із них, будь ласка, повідомте нам про це на: firstname.lastname@example.org The Polish CCHS Foundation “Lift the curse” is searching for families with CCHS …
We are happy to announce that at the beginning of December 2021, the first CCHS Care Center in Poland was launched.
A few patients with CCHS acquired the COVID-19 infection. The presentation, clinical course, and outcome of COVID-19 infection in individuals with CCHS is currently unknown. Dr. Ajay Kasi from the Division of Pediatric Pulmonology at Children’s Healthcare of Atlanta and Emory University is conducting a voluntary questionnaire research study.
We are happy to announce that in September 2021, Avery Biomedical Devices diaphragm nerve stimulators were successfully implanted in two children suffering from CCHS, Laura and Wiktor. The operations were performed by a wonderful and committed team of the Department of Neurosurgery at the Copernicus Hospital in Gdańsk. Congratulations and big thanks to the operator …